While driving to work, I realized advocacy is needed everyday and everywhere. It does not matter how old you are, if you are perfectly settled in a great school, there will be an unexpected event throughout your lifetime. Actually, it will continue to happen throughout your lifetime. When I was growing up, I lived in a perfect bubble. It was not a perfect bubble for my parents. Growing up in 1980s to 2000s, we did not have many resources like today, we did not have social media, no websites with current information, YouTube videos, bloggers, and other ways. Our way was rather old fashioned which was to drive to seek resources. Luckily, my senior year in high school on my IEP was advocacy knowledge. My teacher of the deaf educated me on my rights for the real world. There was a huge gap between early childhood setting to real world setting.
Honestly, it was frightening. I faced a bad experience at vocational rehabilitation services when I was 18 trying to get college financial support. “What do you want to be when you grow up?” I knew I wanted to work with deaf children and guide families. The counselor rejected the idea. I also had passion in designing, he rejected the idea. Few months of rejections. I did not get the help after all. I have faced discrimination by companies during interviews, a lady who was thrilled to see me and loved my resume, but she tossed the papers as soon as I told her I have a hearing loss. I did ballet, jazz, hip hop, gymnastics, cheerleading, basketball, flute,and volleyball. It was a beautiful ride! However, I was stopped by a referee at a intense basketball game, my skin was flushed. He stopped me because of my hearing aids. The coach and my parents fought for me.The crowd roared. I resumed playing. I was in high school, I faced some difficulties- movies with no subtitles and tests where I had to listened in regular academic classes.
I had anxiety.
My teacher of the Deaf fought for my rights and accommodations.
I have been advocating since my childhood for education and extracurricular activities in the real world. I found myself advocating as a mother. I advocate for my daughter, her needs and situations. She is at the age where I cannot fully advocate for her, but with my experiences, I guide her and tell her to grow through things instead of go through it. (My favorite quote: "Grow through what you go through".) There are boundaries. I guide her in what is appropriate and what is not- social communication , social media- I removed the apps- actually she removed them herself. I also advocate as single mother and as deaf.
It is everyday and everywhere.
Advocating is not only fighting for what you believe in, your rights, but it is also asking for proper help for your needs.
Be loyal to yourself, do not let others put you down.
Recently, I woke up from a dream where a lady did not want me to talk because of my speech and did not want me to proceed. It was weird, I have been at same job for the last six years and I call it a home. Maybe it was a sign, a friendly reminder on advocacy that I need to share with you guys.
It does not matter how old you are, how old your child is, where you are at- continue to advocate, be consistent, educate yourself along the way, teach your children not to give up and prepare them. My mother delivered me, she saw me take first breath and wept when she was told that her daughter is deaf at age ten months. She continues to guide me, remind me to use my backbone, and remind me that I am worthy.She will continue to walk besides me on advocacy until her last breath while my daughter will walk besides me on the other side to learn on advocacy while I can mentor her and remind her that she is worthy not to let others put her down and advocate for herself.
Here we go again, consistency is hard. Do you ever feel you work on a goal then it drifts off eventually? I have a lot of goals. I am very driven. I am obsessed with completing my duties such as mother, employee and owner. I love to help, I strive for the best, and I want to do more. I don’t want my deafness to limit me.
This is an image- me in mommy hair bun, work out clothes and sneakers to push myself and running around. My lists are getting too long. Obviously, we are back to school. Three to four hours of homework. Exhausting. Thank goodness, one of the mothers who was my roommate on girl scout camping gave me tips on online grocery shopping- I ended up ordering online a few times already to make my life easier. Guilty but loving it. Do you feel you have lunches to make, pack snacks, errands, laundry, and charging Processors/packing hearing aid batteries in bag to be secured- I can be guilty that I run low on my battery, but I am still old fashion gal and still love my disposable batteries. The “fish stickers” it excited me to peel them off!
Slow down. I stopped and realized I am back in not so balance cycle again. One moment, I will not lie. My daughter got frustrated that I could not come to her right away to help her to do something.To her, I was emotionally unavailable. I explained. There is only me. ME. To do everything by myself. There isn't a husband to help me to split the duties or to be there for us. I am picking up while I am explaining to her, I point to her there is no husband next to me so I do it all. My large mommy bun is tilting to left side slipping down away from the rubber band. And of course, the joy of communicating is telling her she needs to step up on doing her chores to relieve me and build her own independence skills (SLOWLY).
So, I pulled out a blank journal and decided to write my goals. I listed my goals. Yes, I am the mother here who is OCD with lists. If I am not organized, I’m slightly fragile. If I don’t complete the list, I feel like a failure. I realized they are just lists. It does not defines me. Balancing defines me. Again, I have to take care of myself before others so I can serve. I wrote down what I can do for myself, what can I do if I get stressed even as a mother “Go to my bedroom for 5 minutes and meditate”! It is also setting boundaries and setting myself up to be committed to myself to the best version I can be and find the outcome results.
I now have been writing my journal daily to hold me accountable, this is what I write-
I called my daughter's name a few times already, and she did not respond to me. I got frustrated with her. I told her she has a name and she should acknowledge whoever calls her name. It is rude if you do not, right? "Mommy, why do people have names?". I was puzzled. I explained to her so people can respectfully call other people names instead of saying "Hey you" and for identity rights like birth certificate and picture ID. Especially school enrollment papers. I dug deeper through research and found names were given between 500,000 to 50,000 years ago due to Christianity, burial, and conversational wise by using description. They spoke a name and it showed to respect.
Today, I learned it is not just names. I found people using descriptions of others instead of names. How offensive? It can be offensive if other people describes our disabilities and what we cannot do instead of our names first. "The girl with nasal accent who .." "The boy who has something on his head.."
Instead, it should be "Ashlee is.." and instead of pointing our flaws or what we cannot do, we can say,
"Ashlee, she owns a business. She sells Deaf Awareness apparel. She is also deaf"
"Ashlee loves to draw. She loves to help others and she really does love her family. Even though, she is deaf, she does not let things limit her!"
My daughter recently joined a Best Buddies Program. We reviewed paperwork and I really loved this one paper! "Remember to treat your buddy the way you like to be treated (The Golden Rule). It is important to use "People First Language" the disability does not define the child." The example was given, "She is a student with Down Syndrome" NOT "She is a Down Syndrome girl". I have been called "The deaf girl who is on the cheer squad" when I was in High school on a cheer-leading team. I just hope our children can prevent this and even for us as an adults to teach them and to advocate for themselves. I even would want my daughter to be called "Makayla" not "The girl who has a deaf mom". She has a name. She has good qualities. We all do.
My favorite quote these days is "If you have nothing nice to say, say nothing at all" and to follow the "Golden Rule"- treat others as you would like to be treated.
Take a picture of yourself with a name and post on Instagram with hashtag #LAR'snamemovement (LAR is for Love, Ashlee Rose in case you are wondering) and @loveashleerose to help the Golden Rule Movement. Be an advocate for yourself, for us, for our children, and for all..
When I meet people and some of them would say “I have never talked to a deaf person before” or “What does that mean?” while they are learning how to interact with a deaf person. It is not something you are supposed to be a professional at. It may mean taking the time to learn and to be flexible to meet a deaf person on a bridge between deaf and hearing worlds. It does take a lot of patience. We do appreciate the effort and consideration from others who are willing to do so.
It is not just you that have to learn to communicate and interact with us, we also learn to communicate with you and interact with you. It works both ways. The best example is my daughter. She was born to a deaf mother. She was not equipped with every power and knowledge right away . Over the years, she continues to learn to communicate with me, what I am capable of and not capable of, and when I cannot hear (device off, in water, in dark, and the whispers). I noticed recently she has been whispering to me in conversations knowing I can lip read and I’ll whisper back to her “Why are you whispering?”. Did you know I continue to learn to communicate with her because she keeps growing, her speech keeps changing and her teeth position keeps changing?Did you know when I get new mapping sounds in my processor or new processor, it is like learning all over again..For my daughter, she studies me grasping the sounds and it requires patience every time
My daughter is in fifth grade, lots of fast things going on that her peers are experiencing like when we were in high school. For example, gossiping, say things they do or do not mean.I educate her that all children are extraordinary not just certain ones. ALL. They all are amazing, unique in their own ways, and there is something we can learn from each individual. Even as adults! I educate her that everyone has their own journey, a few miles to a million miles of pain, struggles, strength,and trials. What if they are going through a transition such as death, divorce, income changes, moving, drugs, alcoholism, disabilities and other personal issues.
Life is not easy. It is their chapter. It’s their pace how they want to perceive it and how to grow from it. Do not judge. We do not know.I tell her to choose words carefully and think about them. Protect your words if you do not want others to know and if you do not want to hurt them. Spread the words by saying the words to change the world, to show kindness and love, to educate others and to learn from others. Protect or spread the words. Choose.
As a parent, my main focus on parenting is guiding her on choices, actions, morals and values. Share thoughts, show her outside of her painting what we see as she’s not always aware. Coping skills when she gets frustrated or boredom I guide her to express her frustrations by saying “ I am feeling anxious because I am bored or hurt” and figure out how to get through it. Stop and breathe. Slow down and learn. Time is precious. We have to learn to understand others and ourselves.
“She cannot hear. She is deaf” said my daughter.
Humidity creeps in. Rain sprinkles softly. The flowers stand still. The mountains are thick and green. The grass is definitely better on the other side of America- I am in my hometown, Vermont.
I am listening to my favorite music clip- NO ONE absolutely knows my secret power. (My secret power is I can listen to music secretly. It is a Bluetooth clip that connects to my IMusic playlist. You can make phone calls on it as well). Waves of memories rolls in. When I was twelve, my father had this old beautiful gold convertible Cadillac and at nights, he had the top down. I laid down in back seat looking at stars and played my first favorite song “Dreaming of You” by Selena. So loud blasting. I knew it would not destroy my hearing since I was already profoundly deaf! My father was running a huge carpet warehouse that was connected to our house. My brother, his friends and I blasted the music speakers and danced or played hide and seek in the dark. Every night during the summer, we played basketball for hours. I thought I heard the sounds but I did not.
While visiting my aunt, I showered every night and had my processor off for rest of the evening due to wet hair and quiet time, the town was already quiet. Except one night, I delayed my shower and sitting on my bed. The fire truck sirens were going off forever! It sounded like it was next to me. I wondered if there was a fire? I said to Makayla, “what’s going on?!” I was absolutely amazed I was able to hear it miles away! There wasn’t a fire after all, they had fire trucks driving a baseball team after a successful game.
The first week has flown by, my mother flew out to join us for another week. We packed up and went to check into the house we rented for a week. I heard this unusual sound. I ignored it. The next day, walking around the pond in the backyard, I heard this same sound I ignored before. It puzzled me. I said to Makayla, “What is that sound? It sounds like this.” While I tried to imitate the sound and pointed to the sound when it appeared again. It’s a frog! I can’t possibly imitate this croak and ribbet sounds correctly. Of course, the preschool song came in my head “Frog Went A Courting”! I teased the teacher I aide for, my mother and daughter the song and part of lyrics “M-hm. M-hm”!
My vacation reflection:
When I see rain and hear thunder, it brings me back two specific memories.
During my childhood, I only had hearing aids and thunder was probably one of only few sounds I heard without hearing aids as sounds of deep thunder claps and vibration were connected. In Vermont, my mother was driving us to KFC to pick up fried chicken dinner. I was four years old sitting in the front seat (before car seat laws changed drastically due to safety regulations). I see my beautiful mother, the thick green trees and scenery outside of her window. It is pouring. She is laughing. I am not. I was scared and shy a little girl. “Mommy, I am scared”. I heard the thunder. “Did you hear the thunder!?” Said my mama. I gulped and nodded. She said, “The Angels are having so much fun up in heaven! They are bowling!” “Really?” And it comforted me in some ways.
My second memory was when I was about four years old again, I knew I was different already. My brother wasn’t wearing hearing aids. My parents, grandma, aunts and uncles would ask me often, “Can you hear me?” Or “Can you hear that?”My grandmother was babysitting me, my parents gave me kisses as they were heading out to dinner and movie. I cried. I told them the sky doesn’t look good and asked them not to go because I was afraid for their safety. They decided not to go. Then down the street, the light pole fell down and electrocuted a person. The ambulance and fire truck sirens went off. I sat down by the window, held onto my cross necklace praying that I wouldn’t be deaf anymore. Thunder clapped. Rain poured. Lightning flickered.
And I’m still deaf. I wouldn’t be who I am today if God healed me at that moment. His plans are always better than mine. I learned so much from my deafness and both sides of experiences - wonderful and painful kinds. I get stronger day by day by accepting things I can’t change and the courage to change the things I can, and the wisdom to know the difference. The rain storms brings me a friendly reminder to accept myself, deafness and my storms.
Dance in the rain throughout all storms!
My! My! I am back! I had two weeks spring break from my work. I have been busy planning spring collection on the deaf awareness apparel. It is very exciting! Also, a slight nerve wrecking. But like Christy Wright’s famous saying, “do it scared”, there is no perfect timing on everything. Again, when things work out, it evidently shows the perfect timing.
Four more new designs are coming to the shop on April 4th. It is really fun and inspiring! I love the joy I give to the community and it is humbling to receive messages and positive reviews on the shirts. I am trying to fit everyone in- hearing aids, one to two cochlear implants, ASL, SLP, audiologists and teachers of the deaf as well as families who is part of a hearing loss journey.
One of new shirts, “My Voice... My life.. My story...” I feel this applies to everyone in all communities. We all have something, we all are unique and made to be different to teach others, to learn from others and to help others.
To me, the shirt means ... “My voice” it is.. my accent. Over the years, I would not want to talk because someone would say “why do you talk like that?” To now these days, “ Where are you from? England? Australia?” I don’t mind at all as I accepted myself and my voice. “my life” is my daily deaf life since birth to now it continues to unravel and it’s a beautiful life. It is up to us to enjoy or not. I choose to enjoy. “my story” is single motherhood as deaf mom and hearing daughter- it’s not perfect but it is perfect to me! I love watching my daughter learning and educating her peers how to communicate with me.
This is my voice..This is my life.. This is my story.. What’s yours?
I love connecting with my clients. I do not call them customers. I just feel “customers” is a one time relationship, you just say “thank you” and “bye” when they check out. Right? When I worked at a high end hair salon for a few years, the term “clients”was used. Our clients would come in every 4 to 12 weeks. We would build relationships with them. I saw the difference in “customers” vs “clients”. I am feeling a strong connection with my clients, I love writing thank you cards to them and sharing our personal stories on hearing loss.
One day, a lady asked me on the social media if I was open to trade our items. She has a hard of hearing toddler, so she wanted deaf awareness t shirts for herself and her daughter. She makes candles. Yes! I love candles! I even love connecting with other people and support their businesses and journeys! I have been falling in love with candles more lately than ever. My uncle would give me candles at Christmas time. Lately, on Saturdays and Sundays, I light my candles during cleaning and productivity hours. I was thrilled that she makes candles! She picked out the shirts and I told her what kind of scents my daughter and I enjoy. We shipped our packages. She even made a donation to Deaf Education. We are alike, we love doing something we are passionate about and we both wrote each other beautiful cards.
When the package arrived, you should have seen the look on my daughter’s face. Her look of complete joy when she saw Lavender candle! We both spray lavender on ourselves every night. Well, I have to spray on her blanket, her stuff animals- every single one of them, her pillow and on her chest. It was my Grandmother Rose’s favorite color and scent. She also gave us Dryer Sheets and Mabel’s Garden candles. They all smelled so good! I even used them during the week not just the weekends! She and her daughter wore their shirts to their audiology appointment for ear molds. What a perfect place to wear them! It warms my heart that my clients are happy with the shirts and expressing their journeys out there. My hope is to open the door for more public awareness in the deaf and hard of hearing community.
Candles are from http://lusterandlore.com/
Motherhood is more than I imagined! When my daughter was a toddler, it was so much fun and chaos at the same time! We did a lot of crafts together, read books together, baking together and adventures like hiking, vacations with my family, and local events.
Yes, one time she threw her brand new sparkle silver shoe out the car window “So my prince can find me and bring me back the slipper”(age 2.5)
Yes, she peed at the library on a sofa chair like a waterfall and smiling. (Age 3)
Yes, she broke my willow tree doll and found super glue, she tried to fix it herself without me knowing. Then rubbed her eye and screamed bloody murder, (not that I would know). It took my dad, my brother and I to hold her down and open her eye with warm washcloth and emergency room( I did the work, they didn’t need to do anything..It was a precaution and we learned that superglue does not damage eye sight). (Age 4.5)
As she got older, less activities and less reading time together. She is more interested in making her own slime, YouTube DIY, and social time with friends. Today, we had a conference with her favorite teacher. She is doing well but needs to improve more on reading. She was the reading queen and the bookworm girl. A few weeks ago, I asked if we could read " Wonder" book together. She wasn’t interested to read it with me, I told her teacher that I offered to read the book with her. We all shook hands together to work on reading.
My! It’s heaven! We read the book together out loud in bed. She pointed her finger word by word, so I would stay on track with her. She explained they read aloud in class by reading a paragraph and pass on to the next classmate. I sighed. “I know, that was a stressful time in my school years. Fourth grade and fifth grade, especially. So embarrassing to read with my speech but mostly, I was nervous the entire time trying to figure out which paragraph would be mine. I would count the students then count the paragraphs to mine and then practice in my head. Or daydream and didn’t know which was my paragraph to read- a classmate would nudge my elbow and point.”
Meanwhile, Auggie introduced himself. He described himself as ordinary but others may not see him as ordinary except his parents, of course, found him extraordinary. That was exactly me. I felt ordinary, only by me. But I did not feel ordinary by others. I did feel extraordinary by my parents and family. It hit home. My daughter sensed the struggles with Auggie and I. She knew.
Luckily, it was just my daughter and I. I never thought I would do this method with my daughter! She was understanding and helpful. It was a flow. My heart with love for her and our special time together overflowed.